Effective Messages to Reduce Stigma among People Newly Diagnosed with HIV during Rapid ART Initiation
Abstract
:1. Introduction
2. Materials and Methods
3. Results
3.1. Participants
3.2. Pre-Diagnosis HIV Beliefs Shaped Perceptions of HIV Diagnosis
When it first started, a bunch of people were dying. I felt like it was a different world for me. It was a world that—and then it evolved to be—to seem like primarily for gay men. So, it really seemed like it was in a world that would never touch me. It would never—I mean, I never had met anybody with it. So, I didn’t have any friends around it. I learned everything I learned from school and TV, but it was never real to me. In actuality, it was kind of gross, too.(37; Black; Cisgender Heterosexual Man; SF)
Gross. Disgusting. Unacceptable. Life sentence. Like you get it, and you die. There’s no cure. Very bad. I have a really bad vision about HIV before then. I didn’t even have friends who were HIV-positive. That’s how bad it was. Now that it’s on me, it’s like—just sad, but it happened.(33; API; Cisgender SMM; SF)
I thought I would never get it. I thought I would never get it. Like… I used to be so particular about who I chose to spend my evenings with, in a sense, you know? Like, I wasn’t like a lady of the night… Like, because I was like, you know what, I’m a pretty good person. And it’s like, I’m not a slut.
Like… poor people. Like poor people. Or like, people who just were like… unaware. You know like… illiterate motherfuckers, pretty much.(27; Multi-racial; Cisgender SMM; SF)
Oh god, no. No education about it… It was—it was really just a lot of stigma and a lot of jokes that people were throwing around and just very—a lot of ignorance on people’s part or like that were trying to scare me. And I think it was because, you know, we just don’t want to—uh, we just don’t want that in our lives. And so there’s gonna be a lot of negative jokes or negative comments made about it… So, no, I didn’t really know much about it.(38; Latino; Gender non-binary; SF)
I didn’t know it could be treated. I just thought it was just going to turn into AIDS. So, that’s why I was really scared. I didn’t know a lot. I didn’t know that it could be undetectable. I actually really didn’t know nothing about it. I heard about it, but they really didn’t explain it in school or anything, the details. They just said, “HIV, AIDS; AIDS, you die.(21; Black; Cisgender Heterosexual Woman; SF)
Prior me knowing that I’m positive, like, you know…like, just those in full-blown AIDS, like, those dying or just those who’s about to die. I mean, same thing with me. Like, for me, my notion is, when you have the virus, it’s like you’re almost dying.(37; Native American; Cisgender Bisexual Man; SF)
I have friends, and they were taking their meds. And basically, they were telling me about the virals and being undetected and stuff like that. So, I kind of figured like, okay, if they could do it, I’m sure I could do it. And I see commercials and I’m hearing things and I’m like, okay, it’s stuff that’s really like… People are living with it every day and living long and strong lives.(32; Black; Transgender Heterosexual Woman; Chicago)
I have a lot of friends that are older. And they’ve been positive for many years and they’ve told me how it was before and how it is now and how like people are managing their HIV status. They’re not dying and all that, yeah. That’s kind of how like I realized that it wasn’t a big thing as it was anymore because I see how people are taking care of themselves.(26; Hispanic White; Cisgender SMM; SF)
Um, nothing. And that is why I chose to become a sex educator—is because we got, I think, really, next to nothing when I was in high school and in middle school. Um, uh, I think, like most folks, HIV and AIDS was like this joke and this death sentence that folks talked about. Um, so it was never like demystified, in any way, shape, or form, for me, as a kid, until I got into the work and got into learning for myself.(25; Black; Cisgender SMM; SF)
3.3. Positive and Reassuring Messages during the RAPID Experience
They really simplified it for me, which made it easy to understand. Yeah, so it was [their] enthusiasm that really [did it]—because it wasn’t nothing like really brainiac about it. It’s basically simple procedures. It’s really easy to do. Just stick to it. Take your medication and you’ll be fine.(37; Black; Cisgender Heterosexual Man; Chicago)
I learned a lot. They gave me—I still have my little booklet that they gave me, because they gave you all this information, that HIV can lead into AIDS. I have all these little pamphlets of what it can be, and what can it transform into, and the whole “U = U”, how it works.(20; Latino; Cisgender SMM; SF)
He just pushed his laptop to the side and just held my hands and told me, “it’s not a death sentence”. Nobody has ever told me that. I never knew that because I only knew one person with it. Then, when he said you can start treatment today, and explained to me about the treatment, and how it can help you to become undetectable. Because, I was just afraid of hurting people. I didn’t know.(30; Black; Cisgender Heterosexual Woman; Chicago)
So I was eating a granola bar and she took a piece of the granola bar that I was eating and she ate it. And she was like, see, I ate behind you. And it was shocking because she’s a doctor. You know what I’m saying? So I was like, okay, she’s nice so I can’t get this, just by eating behind, I can’t get this. So that made me feel real comfortable after that.(45; Multi-racial; Cisgender Heterosexual Woman; Chicago)
When it’s on you, you’re like ‘I am like disgusting.’ … My body is like tainted forever. It felt like the worst thing.(30; White; Cisgender Heterosexual Woman; San Francisco)
You just kind of get emotional about it, but then I got quickly I got over it because I got to Ward 86, yeah, because like they were like, “Well, it’s good that you got sent here and on the day you got diagnosed and all that. So, we just want to put you into treatment options”, and thank God, yeah.(26; Hispanic White; Cisgender SMM; SF)
…the biggest thing that I’ll remember is the doctor, the doctor that was like, “You know, look at me. I’m here. I’m helping you. You could be someone like me”. He’s like, “You could later on help people that have the same thing happening to you, and then you’ll know how to navigate it”. … And so I think, you know, that talk sort of, like, calmed all the thoughts that I was having in my head.(20; Latino; Cisgender SMM; SF)
…making that decision [to start treatment] was easier—one of the nurse practitioners, and it was like, this is… he was like, “I take the same pill”. He’s like, “I literally take the exact same pill every morning. It’s totally fine”. He was like, “You don’t even notice you’re taking it”.(28; Multi-racial; Gender non-binary; Queer; SF)
The HIV coordinator—he was like, “Oh, well. I had it when I was young”. I think he said like 14, 15. Then, he didn’t get started right away. I think he said he wished he did. I don’t remember. He was like, he’s still here. He’s still alive. He’s still going normal days.
I’m not about to die.(19; Black; Cisgender SMM; Chicago)
3.4. The RAPID ART Process Can Disrupt Stigma
Honestly, [being offered ART right away] kind of like helps with like the anxiety of it all too, like know that like you can start doing something towards your health like immediately is helpful… if I had to wait around and like, you know, if I’m just sitting around the house waiting to be handed medication that I need, like that would not help me. That would not help my whole mindset of it. And like I would be worried about feeling—I would be worried about side effects. Like, you know, I’d be worried about like my health all the time. And something about, you know, getting that medication as soon as possible, it—it definitely helps—it helps me—help cope with it a lot better.(Age Unknown; Black; Cisgender gay SMM; SF)
…basically, a month of just me staying in my room waiting and panicking internally. I wouldn’t want to go out. I wouldn’t want to really do anything because of just that mindset of anything might happen that I can get in contact with someone, and that was the main thing, was that anything that can happen, I might—something might happen. I don’t know… just that constant fear about I don’t want to give it to anyone else, and so until I’m better, I’m not doing anything.(24; Latinx; cisgender gay man; SF)
I think if I would have had to wait, I think I would have, one, been really scared… Um, I think them giving me the medication that day, one, it normalized the situation and just being like, you know, “this is something that happens. It’s happening to you. The next step is for this to happen. We can do that right now. Because if we do that right now, and you’re already on it, when you come back… you know, you’ll most likely be fine”… Um, not to say the scary part’s over, but it was just that little hump of like, oh, I don’t have to wait until I find a doctor.. Like, I’m not going to have to live with this for another month and be all weird.(28; Black/Latino; Cisgender Queer SMM; SF)
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Campbell, C.K.; Koester, K.A.; Erguera, X.A.; Moran, L.; LeTourneau, N.; Broussard, J.; Crouch, P.-C.; Lynch, E.; Camp, C.; Torres, S.; et al. Effective Messages to Reduce Stigma among People Newly Diagnosed with HIV during Rapid ART Initiation. Int. J. Environ. Res. Public Health 2024, 21, 1133. https://doi.org/10.3390/ijerph21091133
Campbell CK, Koester KA, Erguera XA, Moran L, LeTourneau N, Broussard J, Crouch P-C, Lynch E, Camp C, Torres S, et al. Effective Messages to Reduce Stigma among People Newly Diagnosed with HIV during Rapid ART Initiation. International Journal of Environmental Research and Public Health. 2024; 21(9):1133. https://doi.org/10.3390/ijerph21091133
Chicago/Turabian StyleCampbell, Chadwick K., Kimberly A. Koester, Xavier A. Erguera, Lissa Moran, Noelle LeTourneau, Janessa Broussard, Pierre-Cédric Crouch, Elizabeth Lynch, Christy Camp, Sandra Torres, and et al. 2024. "Effective Messages to Reduce Stigma among People Newly Diagnosed with HIV during Rapid ART Initiation" International Journal of Environmental Research and Public Health 21, no. 9: 1133. https://doi.org/10.3390/ijerph21091133